If heart damaged after years of undiagnosed hypothyroidism, will optimum dosage of Thyroxine, bring heart back to health in time?

Undiagnosed for over 7 years, TSH 7.5 (range 0.2 to 4.5) in 2007, but GP did not make me aware, despite laboratories recommendation 'borderline' and should be re-tested in 3 to 6 months. 7 years later, feeling absolutely awful (typical hypo symptoms) insisted on another blood test, AND a print out of results to show a specialists. Discovered TSH 8 (last year), so basically TSH 7 to 8 for approx 7 years. Has my heart been affected, and if so, now I'm on NDT, can it return to health, or has it been permanently damaged? I'm female, 54 years old.

52 Replies

  • cc120: I totally feel for you! The only studies I've found were short term and cardiac output improved but did not return completely. Maybe someone here has read other more longterm studies.

    Damn stupid doctors. They have no idea. Because most of us are women, oh, typical women complaining of fatigue and whatnot. Misogyny. Even the female doctors just toe the line. The only time I was treated correctly was by an old fashioned male M.D. who survived the holocaust. May he rest in peace. He was an excellent diagnostician. The rest of them aren't worth spitting on.

    The struggle continues.

    Ironically it takes a bit of increase in thyroid dosage (even if it's not really exactly correct) to get angry enough to do something for ourselves. Otherwise we just languish in fatigue and apathy.

    I thought a person had to be extra smart to get into medical school. Hardly. They only have to answer exam questions correctly and then they can forget everything they never really learned.

  • I know , it is so ridiculous. If it looks like hypothyroid, sounds like hypothyroid and the patient feels hypothyroid well then it COULDNT possibly be hypothyroid! Too many of us have suffered because doctors just dont take the time to actually listen. I have seen about twenty different doctors this past year and only ONE of them has actually placed their hands on me to examine my body. I was told by several doctors that I was psychosomatizing my symptoms. Ridiculous. I had a CK level of 4700 (normal is 100 in Canada) which we see with severe hypothyroid states but of course labs are normal so all of my hypo symptoms including facial swelling and going nearly bald must be in my head. UGH.

  • suzannai, have you managed to get on thyroid hormone?

  • Gabkad, I have been on low dose T3, then added NDT, then doc changed to a higher dose of T3 so I am now on 135 mcg T3 compounded ....no changes so far and not overstimulated. She is recommended adding in 4 grains of NDT but I am going to wait a few weeks

  • Wow, suzannai! This is here in Canada?

  • Hi Gabkad, I am Canadian yes but saw many doctors who kept saying that my thyroid is normal despite severe thyroid symptoms. I am now on a medical leave and in the US. I am working with a doctor here. The dose is quite high but so far I feel fine on the 135 mcg of T3 but dont think I am ready to add in the NDT. I think that legally this is the highest amount that can be prescribed. Doctors and endocrinologists did nothing for me in Canada, just said I was psychosomatic.

  • Are you sure you are absorbing all that T3 you are taking? I know I absorb mine (it's now 15 mcg per day) and I can feel it.

    At least in my case there was a doctor, once upon a time treated the condition correctly. So I know what 'good' feels like. It lasted 5 years. My most dynamic years of life. But the latest cohort, since 1994 has been less than useful, under dosing until I had myxedema which they couldn't recognize if it stared them in the face (which is hard to do when they are looking at a computer monitor...... We should be able to video ourselves while in the examining room right onto the screen so they couldn't avoid seeing us and wouldn't be inconvenienced by turning their necks....LOL.)

    I am hoping now I'll be able to get around the situation. One step at a time. They just don't want to accept that I function best when TSH is suppressed. Once it gets to 1.0 I may as well lie down and die. I don't know why such a seemingly small difference makes such a huge difference in how I feel but that's just the way it is.

    I showed the latest two doctors photographs of me with goitre and without. My face was different!! They were not particularly interested. The latest mix and match of under dosing has resulted in my thyroid beginning to get puffier.

  • i dont know if i am absorbing or not as i have nothing to compare it to. I understand what you are saying. I developed myxedema this past year. my face is terribly swollen and it is my main concern. even my nose and chin are enlarged. i brought pictures to doctors and they all agreed that "you look different" but it cant be your thyroid. I honestly dont know what I should do....continue with the T3, add NDT? i think my problem is cellular resistance. I developed all symptoms after a very stressful event last year. cortisol was high 24 hour urine and blood but my saliva test now shows low in the am and noon and high at night, although they are all in the normal range. Did you try NDT? Were your labs ever abnormal?

  • Mine started in my teens when I started university. I stopped getting my periods and was exhausted. This would fluctuate and nobody tested anything. I had a goitre on and off (I guess in the summer I was healthier).

    I didn't start treatment until age 25 and even then an endocrinologist was looking for a prolactin secreting microadenoma. Prolactin was not super high, but a bit more than double top of range. Fortunately a family physician (not mine) noticed the goitre and put me on Eltroxen which worked fine.

    And then....well, things did not continue along that vein....

    But if your nose etc is getting bigger, have you been checked for growth hormone excess? She had all sorts of symptoms for several years before someone cottoned onto testing growth hormone. She had a tumour in her pituitary. The physical changes have been permanent but at least she responded well to surgery and the chemo drug. In this apparently she is very fortunate. But now she thinks her thyroid is underfunctioning (might be her surgerized pituitary not producing enough TSH) and has gained 10 pounds over the past 6 months. But as usual, there is resistance in the medical profession to consider what is going on as being 'for real'. The incidence of growth hormone secreting tumours is only 1:50,000 so it's not something anyone thinks to test until the situation gets bad.

  • Sorry, the edit function is not working for some reason. I left out a sentence: A friend of mine had a growth hormone secreting pituitary tumour.

  • yes, i was tested for GH and had a pituitary MRI done aswell. If i look at some photos online of old myxedema patients (old photos, not old people necessarily) they too have enlarged noses due to the mucin deposits.

  • Your doctor wants you to try NDT?

    Since both Synthroid and Cytomel are the L- versions, maybe the D- version of the molecules will work for you.

  • Is this compounded, the D version? I have never heard of it.

  • I have tried NDT, short term and Cytomel and am now on compounded T3. I dont know if it is the L form only or also the D form. I will call the pharmacy to find out.

  • Natural dessicated would be the Dextro form. Levo forms are the synthetics.

    Someone on this forum wrote that the compounded Cytomel has trouble with absorption.

  • suzannai, I do know that when patients are in the ICU because of severe life threatening illness, their thyroids pack up for a while. It can take several months for function to return to normal. At one time they thought maybe giving them thyroid hormone would be a good idea, but it killed them. So I suppose the body has this response to severe stress.

    Because I'm so totally aware of thyroid function now that all this cascade of badness has occurred, one of my acquaintances told me that her TSH was a bit elevated. I told her to get the doctor to check the fT4 and fT3. The fT3 was on the low side of range. But she'd gone through two years of super stress with her elderly, very ill father who subsequently died of kidney failure. She's seeing a naturopath and taking various supplements but she is peri-menopausal as well, so it is possible that all the stress she experienced may have a permanent effect.

    I honestly wonder how it is that people who went through the second world war, not just being bombed but ending up in concentration camps then survived all that stress and carried on with physically normal lives. Meantime, I went to university and my thyroid packed it in. I feel like a physiological wimp.

  • yes it does seem that severe injury/stress/crisis causes the thyroid to down-regulate as a means of energy conservation. I understand that for some people with thyroid issues either hypo or resistance, they eventually have a crisis that sets them over the edge and the body is no longer able to manage the hormones well. I think that this is what happened to me. Which is fine and all to understand and try to make sense of it but I am annoyed at trying to figure out how to treat it. Keep getting differing opinions - T3, NDT, one dose per day or multiples? I am afraid that I am going to mess things up more by experimenting but I have to do something and I cant seem to find anyone to help in this regard

  • All I know is when I spend time in the Caribbean, I'm fine. It takes two weeks and I have energy. Maybe too much. And it has nothing whatsoever to do with being on vacation because I can go on vacation up here in Canada and I never get energized like that.

    I was wondering if it's the sun. Maybe it doesn't matter what the vitamin D supplement is supplying or how high the blood level is, there is no substitute for sunshine.

    I just may be getting the opportunity to do something about it soon.

  • Very interesting. I suppose that explains why some people do better with NDT than cytomel. I am wondering about my T3 compounded as I dont notice an effect at a high dose of 135 mcg vs 90 mcg of cytomel and even lower of sustained release T3.

  • I don't know what the body has to do to convert the levo form into the dextro form. I wouldn't be surprised this is why people on Synthroid have T4 to T3 conversion problems.

    I don't know, for example, how many micrograms of T4 and T3 a normal thyroid gland releases every 24 hours. I don't think it's possible to measure since so much of it gets bound up or goes into tissues like the kidney.

    The scientific geniuses can't just remove a thyroid from an animal and make like a hydroponics experiment because anything that assaults the thyroid is going to immediately affect how it functions.

    So even when we are put on whatever dose of any of the thyroid replacements, it is hit and miss to figure out what works for any one of us and what doesn't.

    With this humungous dose of Cytomel, what is your fT3? I know I could never ever take anything remotely like that. Even a 5 mcg tablet will raise my fT3 to a good level at 5 hours after dosing. But then it falls and 12 hours later it's down at 4.4. It wasn't tested at 17 hours after (which was the time gap between dose 2 and next day dose 1) but I could tell by how I felt when I woke up that it was not good at all.

  • Can they even do a T3 urinary excretion study? Like if you take this super large dose, how much of it are you peeing out. That would possibly indicate resistance. I'm just speculating.

  • I may be full of poo: here's a small discussion on Levo: healthunlocked.com/thyroidu...

  • Vets are supposed to be more intelligent ! But I wonder when dogs and cats are put on diets?

  • carolr, you just reminded me: one of my cats had a routine blood panel done at the vet. TSH, fT4, fT3 were done among all the other tests.............cost? $99 plus tax. Imagine: fT4 and fT3 are just every day routine, no begging. My cats are more thoroughly checked out than I am. Maybe I should just go to the vet.

  • Thank you gabkad, it doesn't surprise me full heart health is not restored. My GP is a woman, but just wouldn't take my complaints seriously and obviously didn't properly look at or properly understand my blood test results.

  • I think you are being a bit unfair by grouping all doctors into the same mould.I personaly am very grateful to my lovely doc for doing everything within her knowledge to help me with my thyroid problems, and other complaints.

    I cant imagin what many people would do without them...I for one would never spit on anyone.

  • Well spoken Sam...Unfortunately the treatment of thyroid problems is still a huge learning curve for us all, Medics included and there needs to be a huge coming together on all sides to get better diagnosis and treatment for future generations.Spitting on our GPs isn't going to help one little bit.

  • Unfortunately neither doctors nor politicians have any interest in a dialogue about thyroidism. Nor has my lot been any help at all with anything else I've gone to them with over the past 5 years. If it's not life threatening round here - forget it.

  • Although I can't get the treatment I need, I count myself lucky that I have a better GP than a lot of people. Not all are bad. Unfortunately some are terrible!

  • I don't know that they're bad doctors. They just seem to have an agenda that doesn't have anything to do with making people feel better. And the agenda politicians bring to the matter of health appears to be even more complicated. And to have even less to do with the wellbeing of patients.

  • Sam you are very lucky to have found a doc that listens and takes your case seriously. I agree that it is karmically unwise to spit on anyone but for many of us this has been a long and frustrating journey. It is one thing to feel unwell, but another to completely feel that these changes are out of our control and that there is no one there to listen or to help. I wish that there were more doctors like yours out there and that the good ones go on to spread their knowledge to the younger generations.

  • I wish the good ones (like mine) were allowed to treat us the way they know is best. My doctor fought to get me t3 but want allowed to prescribe it. A previous GP left soon after he was told he was no longer allowed to prescribe me t3 and would have to prescribe t4 instead. He knew how unwell I would become. I'm sure I'm not the reason he left but he definitely want happy there all of a sudden. Such a shame

  • i feel for you. hopefully you can maybe look into ndt. if you could find some research online then maybe your doc would be more likely to prescribe

  • NDT doesn't seem to work too well for me. I appear to need T3 only. Is the only thing that gets me well. I take 100mcg at the moment but may possibly need to increase slightly as I'm getting sleepy in the afternoons. Perhaps that is because I can do more now ☺

  • Sam75, it was a form of expression of my disgust. I don't think I'd know how to actually spit on anyone. Have never practiced although based on what some people produce out on the street, it seems some have serious skills acquisition in this activity.

  • I agree. My GP is good but he is unfortunately not allows to help me the way he wants to. That isn't his fault. Also, when my mum was rushed to a&e the staff were excellent!

    I know some doctors really are rubbish but there are some excellent ones out there ☺

    Carolyn x

  • Please ask to be referred to a cardiologist who can do the appropriate tests which will at least let you know one way or another.

    It is the least the GP can do, and it will put your mind at rest.

    I am glad you are now diagnosed. My TSH was 100 when finally diagnosed and my heart is fine.

  • Hi shaws, unfortunately my GP didn't diagnose my hypothyroid, I did with the help of blood test results and the advise from the people on the forum, including yourself. To be referred to a cardiologist would be a greater battle than to be referred to an endocrinologist. My GP seems to think I'm fine and healthy. Been no help at all with my thyroid condition.

  • cc120 Sorry to hear that your GP missed this .. and for 7 years, this happens a lot I can't think why as it is not new that they should not ignore a high TSH. The same thing happened to me and I had my diagnosis last year when the partner GP spotted it, I think he first noticed that my eyebrows were missing on the outside edges.!

    In any case I agree that at least he can now check you out and refer you to a cardiologist or order an ECG and make sure your heart is OK.

    I am interested that you have started taking NDT, did the same GP prescribe this and do you feel better yet?

    It is usually difficult to get a GP to agree to natural thyroid.

  • Hi Riverfrog, thank you for your input, please see my reply to shaws regarding diagnosis. I am self-medicating with Naturethroid, after supplementing to increase iron, ferritin, b12, folate, vit d3 and calcium. GP isn't even aware.

  • I know the anxiety you feel. I lay on the sofa for 4 years undiagnosed, then 6 years with insufficient medication, and I know my heart suffered. When I finally got enough medication I had enough energy to join a tai chi class. Apparently it is the best heart exercise as you never get out of breath yet your heart-rate rises to exercise level: approx. 120 beats/minute. I can now walk up hills whilst conducting a conversation. I can definitely recommend tai chi.

  • Thank you Lucky legs, I hope when I start to gain more energy via Naturethroid (might also try Thiroyd as cheaper) I will certainly be considering gentle forms of exercise which indeed may include tai chi.

  • I have to agree with LuckyLegs regarding the TaiQi. It is quickly becoming the cornerstone of my recovery. Before I got sick last year I could do several hours of exercise daily without a problem. Several months ago I could barely walk up a flight of stairs....I have been doing a combo of Tai Qi and Qi Gong two or three times a week now for two months and the benefits are enormous. I really didnt think there was much to it. I highly recommend it, not only for the physical aspect but for the peace of mind that comes from the exercise.

  • Qigong was recommended to me for recovery. I haven't yet found a teacher doing classes that I can get to. I was also hoping it would help improve my karate. It's good to hear it has helped you. Perhaps I should make more of an effort to find a good teacher!

  • Regarding the heart....I am so sorry that you have been undiagnosed for so long. On a positive note however, the most recent book that I read: Mark Starr's Type 2 Hypothyroidism, he has a small section that discusses several cases in which enlarged hearts reverted back to normal after using dessicated thyroid. There are images on xray. Once the patient stopped the dessicated the hearts enlarged again and then went back to normal again after the medication was resumed. I dont recall the time line for recovery but it looks like from what he says it is possible to reverse this. Also with Dr Barne's work he found that much fewer of his medicated patients had heart problems than those in the general population so it does appear that thyroid hormone, not sure if dessicated specifically, has a protective effect on the heart.

  • Hi suzannai, very interesting, thank you.

  • I was diagnosed 2 months ago with a TSH of 240 (!) - I was terrified I had done permanent damage to my heart or some other vital organ, and had a really bad 3 weeks or so as the medication slowly woke my body up, resulting in all kinds of odd pains and tingles, weird tastes, lightheadedness etc etc. I was frightened to go to sleep in case I didn't wake up :( However my wonderful allergy doctor took pity and gave me an ECG and a chest X-ray to see if my heart was enlarged - which it wasn't :) My last blood test 2 weeks ago showed my TSH had dropped to 19 and although obviously I'm still not completely well I feel a million times better and no longer as if some bit of me was going to fall out or stop working at any moment. Now that you are on medication, try not to worry until it's had a chance to work - then, if you still have symptoms, you can get them checked out. Because hypothyroidism affects every system, you need to get your thyroxine levels up before you can think about anything else.

  • Hi RustyMary, thank you for outlining your case, and very wise words regarding waiting till thyroxine levels are up before worrying too much about anything else.

  • Hi I've been taking Enalapril for high blood pressure for about 10 years and within 6 months of taking T3 it has reduced and I have stopped blood pressure meds.It is now normal.

    Best wishes Jill

  • Thank you jjlily, very helpful to know, I may be considering taking T3 later on and this is very good to know. Well done and best wishes to you too. xxx

  • In what way had your heart been affected? Certain issues can be reversed with treatment but it depends on what has happened.

    I had severe bradycardia, arrhythmia and missed beats. 3 different cardiologists failed to find the cause as my heart appeared healthy. Switching from thyroxine (which my body can't seem to use) to t3 only had an an increase in heart rate to boringly normal, reduction of the arrhythmia and many fewer missed beats.

    I hope your heart does improve with treatment and so sorry to hear your diagnosis was missed for so long!

    Carolyn x

  • Hi CarolynB, thank you, very interesting re: t3, with yourself and jjlily. And as Hi RustyMary suggests I will wait till thyroxine levels are up before I try to check on heart health.

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